Stoma Shape Causing Wafer Burnout - Need Tips!

I really don't know where to start! This is going to be long with some background info. I've had my colostomy for almost 2 years now and life is so much better since the surgery, but the shape of the stoma has been causing me problems the last few months. About a year ago, I went gluten-free because we found that wheat was irritating my Crohn's, which took my output from gassy, liquidy, icky, multiple times a day to normal (or very close to) 1-3 times a day. That was fabulous as I haven't had normal output since I can't remember when. I was diagnosed with Crohn's in '85 and have been on just about all the medications/injections there are. Humira got me into remission, but I had so much scar tissue from multiple fistulas and colo-rectal valve resection that my rectum was closing off. Hence the ostomy. My health was so poor and weight so low (for me) that as I gained weight, my stoma has really changed shape.

My stoma looks like Homer Simpson's mouth! The huge top lip and recessed bottom lip! This is the problem. After Christmas, my GI and I decided to stop the last of my Crohn's med and see how I do. I feel great, but my output has become more liquid the longer I've been off the 6mp. I don't want to go back on the 6mp because it's caused me to be susceptible to skin irritations/infections.

Now, because my stoma has a recessed bottom side, I seem to be burning through the wafers in 2-3 days. I'm used to going 5-7 days without having to change wafers. The top of the wafer is still good and tight and hard to get off, but the bottom... Different story! I've used Eakin seals, pastes, different setups, and found a setup I really like, but it's lasting shorter and shorter times.

I've tried changing my diet, but I'm limited to gluten-free foods and I don't know what else to try. I'm up for any help anyone can give me! PLEASE!!!

Someone from another forum, with an ileo, was having some issues, sat in the tub and waited for output to see what was going on. I believe it was an uncovered stoma (hence in the tub for easy cleanup).

Hi. I have an ileostomy as well. I have watery stool and short gut. My output is always the same. With an ileostomy, the wear time is decreased. I am happy if I get 48 hours wear. There are long wear appliances available (Coloplast has one.....I am not endorsing any company....I just found out about it and tried it.). Also, every company uses different "glue" so maybe try another line and see if it works better. Good luck.

By wear time...do you mean 48 hours between wafer changes....I can get 5-7 days without too much difficulty...but not if moisture is under the appliance when put on or seeps in or through the skin after it has set up...

SUZ 2,

You need a CONVEX wafer and the more convex the better. What that does is, (it's a bowl-like wafer if looked at from the side) it pushes the skin down around the stoma and helps the stoma to protrude more away from the body. The fact that the stoma is almost recessed at the bottom, when the stoma emits effluent or recesses a bit to emit the effluent, it allows for seepage under the wafer. That's the problem in my opinion... Please give it a try and let me know... Good luck, Michael

PS Less is more... Just convex wafer on skin (no Eakin seals, no paste). After the convex wafer is applied, fill the space around the stoma with Karaya powder and then put the pouch on... Start there and see how it goes... Michael

SUZ 2,

PS Less is more.....Just convex wafer on skin (no Eakin seals, no paste). After convex wafer is applied, fill space around stoma with Karaya powder and then put pouch on......start there and see how it goes.....Michael

I get approximately 6 to 7 days with mine. I found the reason has to do with 3 things.
One is preparation - meaning I make sure around the stoma is dry, use a hair dryer on it also use a prescription cream that stops itching and redness (mystatin triamcinolone acetonide cream) then put powder on stoma area and shake off. - Then use hair dryer on paste on the wafer. I do change bag every 3 days but wafer stays on for 6 to 7 days. SECOND - I use a pink tape - when the doctors created my stoma, they should have moved it over more because my stomach is not even so I have to put glue where it's not even and that's where it will come loose, I also wear a belt. I think the weather also makes a difference on the wafer.
I never let the bag fill up too much. Also food is very important - I use digestive enzymes and acidophilus which helps me quite a bit. I also drink green tea and also drink alkaline water (9.5 pH water) because it helps me digest better and will hydrate me faster.
Am I happy? NO, but it's something I just have to get used to. End of May will be a year. I do miss not eating salads or lettuce. I have been told to stay away from salads too many problems. I have an ileo and will never be able to have it reversed, so I am also looking for answers. Good luck, Butterfly48.

Thanks for the replies everyone!

For the last couple of months, my wear time for the wafer has gotten shorter and shorter. It's just frustrating. Up until last January, I was getting 5-7 days out of it, usually 7. I haven't changed anything from how I put them on to what I've been eating for the last year. Only the medication change. I'm almost afraid that my Crohn's remission is over and that's why the output is more liquid.

Hey, Snowwhite! I tried the Coloplast longwear wafer, but I developed a rash before the first day was over. I talked to a woman with their support department and she sent me more samples to try, but I had the same problem. I've also used Convatec and have a similar problem. Hollister and Cymed seem to be the only brands that do not give me a rash. I just would like to get back to my longer wear time.

Hey, beyondpar! I wondered if the convex wafer would be a good idea. Since my stoma isn't really recessed (flat when constricts), just really short on one side (1/4-1/2 inch), would it be okay with the stoma in general? I'll have to order some samples and give them a try. I've always used paste because my stoma size is about 1 1/16 in. 1-inch opening is too small and 1 1/8 is too big. I cut to fit the best I can and fill in with the paste. I was in really poor health when I had my surgery, so the stoma looked great for a few months afterward, but as I ate and gained weight back to a "normal" size for me, my stoma has taken on a life of its own! LOL!

I haven't seen a stoma nurse since I left the hospital 2 years ago, and the wound and ostomy center receptionist refused to make me the 2-week post-op appointment the surgeon ordered because I wasn't having a "medical problem" with my colostomy. Maybe I should check with my GP and see if I should see a local Home Health nurse and get her opinion.

Thanks for "listening" to all my whining! I'm just frustrated that my weeklong wearage of the wafer is over. And maybe a little scared that it's my Crohn's becoming active. I really appreciate the advice that I've gotten from everyone on the website. You guys are AWESOME!

Hi Suz2 - I have a colostomy also - the 1" wafer opening is too small and the 1 and a quarter a little too large so I was having burning and rash problems.

I started using a Convatec Eakin Seal under my wafer every time. No more leakage under the wafer - I usually change twice a week, but could probably go longer.

Only thing about the Eakin seal is it is SO sticky you must use an adhesive remover each change or build up will occur.

I also use a skin barrier wipe under the Eakin - and contrary to what Hollister says, I've had NO trouble with a good seal.

Thanks, Pinky. I've tried the Eakins seal and it only lasted about 3 days. I didn't use a barrier wipe under it though. I'll try that and see if it helps. I worry that the seal and the wafer together are too thick for my stoma. It's only about 1/4 in. high on the bottom side where I have the leaks. It's tempting to have it revised now that I'm healthy. Nah, I'll just try and work with it.

If you have an ostomy nurse, have her do a casting of your stoma. Your shape may have changed where a special appliance is needed. The company I use is New Hope in California. They are very good but require a casting of your stoma. I have a large dip to the left side of my stoma and since my op in Oct., I seem to have very watery stools and I must change often if I don't have a proper seal. So you see even with the correct appliance, it can be a challenge but don't give up. I am STILL trying new things all the time. Good luck.

Hi Suz

Convatec makes a mouldable convex back plate that you can mould into a shape that fits you best. When my stoma was recessed, I used the Convatec ones and a little Karaya paste under it, and never had a leak.

The only problem was the recessed part of them is quite deep and not very comfortable, but saying that, it's more comfortable than sore skin.

I had similar problems with ileostomy and posted the reply below recommending trying out an Adapt ring rather than paste to protect skin and prevent leaks. Hope some of it may be helpful.

I have only had my stoma for a few months and initially went through a period of leaks and extremely sore skin as you described, especially when output was very liquidy. I couldn't get the bags to stick properly and for long enough because the skin had small open sores.

The first thing I tried to combat this was to dab a thin layer of calamine lotion all over the sore area (don't worry about it getting on the stoma itself). I used a hand-held fan to get it dry. This helped in two ways, by drying the skin to get a better stick and to soothe and help heal the skin.

I still had problems though when really liquidy and was given Convatec convex bags and had to use stomapaste to "fill the gaps" where my stomach has a crease. Although the paste helped do that, it stung quite a bit when going on the sore skin and was also very difficult to remove if the bag needed changing too soon and it hadn't set properly, making my skin even more sore.

Instead of the paste, I now use an Adapt ring under the seal to fill the gap and make the area for the seal flat. I cut the ring in half and stretch it to fit around the whole bottom half of the stoma (where I used the paste). This has made a massive impact, and I have been leak-free since. It helps with the sore skin as I stretch it to totally cover and protect it and doesn't sting like the paste. It also comes off easily (I use adhesive removal spray) and painlessly unlike the paste, which sometimes had to scrape off, taking skin with it. Since using that, my skin has healed up. When I first used the ring (or half the ring to be precise), I still used a very thin layer of calamine but don't need to now, just use Cavillon barrier spray as it dries really quickly.

I also find it much easier to apply the ring rather than paste if my stoma is active when I change the bag, which it often is as I can put the stretched ring and bag on much quicker than doing the paste.

Sorry for the lengthy reply, but I hope this helps you and maybe others looking for an alternative to stingy paste. Maybe you can get them to send you some sample rings to try.

Thanks so much for the replies! I have switched to Hollister convex barrier and seals instead of paste. I have to tear and patch the seals to fit the gaps from the nodules. I now get about 3-4 days wear time which beats 2! LOL!! The skin around the top of the stoma has become irritated because the barrier really sticks well there and no matter how I try to not tear my skin removing it I still get sore.

I finally made an appointment with my GI a month ago because the liquid output was getting worse and I wanted to know what he thought I should take to get it to stop. Apparently I'm in a Crohn's flare. I wasn't having any abdominal pain and I was still eating so it came as a surprise to me. After he poked around on my stomach, I realized that I was starting to become distended. That would explain why my stoma's retracting in more. I've always had a pouchy abdomen. Even when I only weighed 115 lbs. I took a prednisone pack for a month then started my maintenance dose and restarted 6-mp.

Things have improved except I still have leaking and separation about day 3-4. On the re-check after the pred pack, I had taken pictures of my stoma, the nodules, and breakdown of my skin to show my GI at my last couple of barrier changes. He decided that I needed to see the surgeon and have the nodules removed and stoma revised. I have torn the nodules when removing the barrier before and it takes forever to stop bleeding. The outpatient surgery is scheduled for July 8th unless he has an emergency. Hopefully things will improve after that.

Thanks so much! Your post gave me a lot of info I need. I had permanent ileo in 2008. Recently, output has been much more liquidy; thus, problems! I don't want to have to change every day, but I might be headed in that direction. Needed weight gain caused stoma shape to change. I have a very recessed top and a crater on the right side. My blowouts used to start on the right, now they're on the left; especially when I sleep on my left side, which is the only way I can get to sleep! (Sorry for the whining) Thanks for "listening."

I told my wife the biggest thing about dealing with the stoma is changing the wafer. It is a major job to get the skin prepared, wafer cut correctly, and everything clean before changing. I can only imagine having a constant watery output. I am very lucky to have mostly solid output as the surgeon was able to leave half of my colon after surgery.

A few things I've learned changing the wafer. First, sadly, home healthcare nurses are not experts at changing these things. They kept cutting the wafers too small and I had all this smashed up area of stoma on both sides that has only now healed back together as I cut the wafers the correct size. I change my wafer every 4-6 days. I carefully clean the area, use the remover wipe to get the glue off my skin, then wash it well to get the remover residue off of my skin. I have a small spray bottle I picked up at Walmart that I put liquid soap and warm water in. Have to shave and cut the hair away from the stoma. Then use the skin gel prep, which I've found very important to keep the adapt ring from sticking too much to my skin. So I make sure all the skin in contact with anything sticky is wiped with the protective gel wipe right up to the stoma. I use the adapt putty ring under my wafer--I believe this is the key to preventing leaks and getting longer wear time on my wafer.
I wish you all the best of luck.
KBD

Beyond....

I have been very fortunate - no problems.

Simple works for me also - clean and dry is almost all my prep. I got caught on your statement "fill space around stoma with Karaya powder". Tell me more about what that does please.

"Fill space" ... entire convex area or a small bit around stoma?

When the smallest bit of output seeps in around stoma - burning begins. I am wondering if powder is additional help with that.

Godswoman - I'm glad you got info to help you from all the posts to my situation! I've been able to use many of them and have had improvement.

Kbd - I agree, home health nurses don't know everything about ostomies, but they're better than nothing. After being refused a post-op appointment even with a doctor's order and having been told by the ostomy nurse before leaving the hospital, I have no desire to be seen there. And it's a 1 1/2 hour drive one way. After talking to Hollister support, I stopped using the skin prep. They said it would decrease the adhesive time with the barrier they were sending me to try. I now use a convex barrier and I tear and patch adapt rings around to accommodate the nodules. I'm getting about 4 days now. I have posted again about my revision surgery being canceled. My Crohn's is active again and has changed the nodules, and now I have either an ulcer or the start of a fistula. Yeah me. LOL! Gotta figure out what will work with this now.

Dawneagle - have you tried the Karaya powder yet? I haven't, and I don't think I'll be able to for now. Let me know what you think if you do.

This will make me sound ignorant, but what is a nodule?
kbd

Technically they're not nodules, but I couldn't think what else to call them. They're actually growths of bowel tissue growing on my incision but not part of the stoma. I either have to fit my barrier around them, which leaves skin tissue exposed to any output I have, or fit it over the top of them and hope I've filled in the spaces well with paste or adapt barrier ring pieces.

and suz2,

I am not sure I really get it but know it better. Does the intestine tissue grow? Will the problem get worse? What are your options?

The nodules started showing up as the incision started healing. I didn't have any problems with them for the first almost 2 years. But when my Crohn's started flaring up, they have grown a bit and have white inflamed spots on them. The surgeon was going to do a revision and remove them, but that's changed because of the Crohn's. I'm thinking about not removing them now. They started changing before I really had any symptoms of my flare. I could use them as an early warning system! LOL!